Invisible Pain

Disability comes in many forms. A person with vision impairment can be considered disabled. A person who is deaf can also be considered disable. Disability can be mental, physical, intellectual, etc. Jane has been struggling with disability since she was in eighth grade. Unlike the stereotypical view on the disabled community, the disability she suffers from is invisible. She suffers from multiple medical conditions, such as celiac disease, eosinophilic esophagitis, cataract, and arthritis, that have kept her in pain throughout her life. 

Erica Lee, Portrait of Jane, Kansas City, April 2019. All Rights reserved.

When I first met Jane, she seemed like a bright, optimistic ordinary nineteen-year-old college student. Slowly, we became friends, and I learned of the several medical conditions that she has. Jane had a rough high school experience – an experience I could only imagine. In ninth grade, Jane missed a lot of school – to the point where she received multiple letters from her high school notifying her that she was on the verge of being expelled. Her many visit to the doctor’s office and her physical conditions have often hindered her from attending school consistently. After setting up a disability action plan, one particular teacher did not follow through with Jane’s plan by not giving enough extension for her homework assignment. In the interview Jane says, “to have someone say that you should’ve been able to do it when literally the day before I was fading in and out of consciousness cause I was sedated or I could not separate myself from the toilet …to have people downplay my struggle because they don’t experience it, that is by far the most annoying things about being disabled,”(20:23). I think it was wrong for the teacher to not thoroughly read Jane’s disability action plan. I think it’s important that a teacher communicates with a student especially those who suffer from health conditions that impacts their school life. Other than her health conditions, her disability has also greatly affected her academic and social life. Her absence at school caused her grades to drop and making friends was not easy for her.

While Jane’s high school experience wasn’t the best, her disability has allowed her to become more independent and mature than other students. For example, because she missed many lectures due to her health conditions or going to the doctor appointment, she learned to teach herself the materials taught in school by reading the textbook. In the interview she explained that her disability has allowed her to understand from early on that, while lectures at schools are important, reviewing and teaching yourself the concepts outside school is just as important. This reminded me of Zygie and Sol Allewis from the book “They Were Just People” by Bill Tammeus and Jacques Cukierkorn. In the book, when the Germans occupied Poland in the 1940, Zygie and Sol Allewis had no choice but to become independent and mature in order to fend for themselves. While Jane’s situation did not involve the Germans, she only had herself to rely on to keep up with school.

When I asked Jane the biggest challenge she still faces today, she answered, “It’s hard for me to explain how they [her disability] impact my life to other people who are not disabled because a lot of the symptoms that I experience are very common symptoms.”(13:07) For example, in her organic chemistry lab she had to separate two clear solutions. The problem was she couldn’t see where one clear layer ended and another clear layer began. After she had separated one layer from the other, she asked her TA if she had gotten all of the bottom layer out because she could not see. Then, the TA gave her a funny look and asked for clarification. When Jane told him that she has bad vision, he jokingly responded “I understand, I too have nearsightedness”. This is when Jane told her TA that she has cataracts. Shocked, he responded “I did not expect it,”. Her TA was shocked by the fact, Jane, who looked like a healthy student, had cataracts, which is uncommon among young adults. This is an example of how she has to constantly explain herself. Aside from poor vision, other symptoms that Jane suffers from are stomach pain, joint pain, migraines, etc. While these are all common symptoms that many individuals can encounter once in a while, for Jane it is result of her multiple medical conditions that affect her daily life. Because it is hard to explain the disability she has, Jane rarely talks about her medical conditions to other people.

While, it has been difficult for Jane, her visit to the doctor’s office have also been challenging. In the interview she recount an event that happened in her senior year of high school during a doctor’s appointment. She remembers that the doctors were telling her that she was perfectly healthy because she was young – when she was not. In response to that event she explains, “That was the most frustrating event in my life because I had that happen in eighth grade when I got diagnosed with celiac disease, I had that happen in freshman year when I got diagnosed with eosinophilic esophagitis. I had all these problems and the doctors would say oh you’re seventeen, eighteen nothing’s wrong with you,”(14:50). I was shocked when I heard this. To dismiss the pain that Jane was experiencing because of her age, it couldn’t have been more frustrating for her.

Erica Lee, Portrait of Jane, Kansas City, April 2019. All Rights reserved.

Strength motivates an individual, to push themselves, to achieve goals that were thought unimaginable. Resilience is the ability to overcome a hardship, to get back on track and keep working towards a goal. People tend to believe what they see, but appearance is just a piece of clothing we wear. It doesn’t tell a personality of a person. It doesn’t tell what a person is going through. Thus, our society assumes, like the teacher who thought Jane should’ve had enough time to finish her homework or the doctor who thought Jane was in perfectly good condition because she was young. When I look at Jane, I see strength and resilience. Though her disability has affected her inside and out, throughout her whole life, it has never stopped her from achieving her goals. In fact, I think her disability will only continue to motivate her throughout her life. 

Diversity

Dealing, day by day we all deal with our own problems  

Imagine what the world would be like if people remembered that and to

View and treat everyone how they would want to be treated themselves 

Even if you don’t look like them or have the same beliefs?

Rhetorical, you would think that would be a Rhetorical question

Some might even think it is sarcasm so much that they know the right answer

In reality, people ignore what is clearly right 

To taste the feeling of acceptance and fitting in 

Youth and adults both guilty of this trend

Impacting generations then, and at this rate also the ones to come

Simply being yourself and things that you cannot change fuel this trend

Why does one feel the need to bring someone down?

How does one have so much hate in their heart?

At what point is enough finally enough?

Though it is not a big deal to me, does it mean it is not important at all?

Many logical questions later 

And still 

Knowledge, common sense grade school knowledge which must be rocket science

Evicts out of one’s mind and 

Strategically and collectively out of others

Like a forest fire or tornado, hatred has the power to quickly spread and

It destroys everything in its path

Fearfully looking at the destruction it causes

Everyone or I should say most conforms to the majority instead of stopping it

So many people have to learn how to deal with the negativity and hate from  

Others for just existing and it’s not okay

Unite!

Numbers, there is much strength and power in numbers

In the same way many people follow others to spread hate

Quantity can be used to spread love and fight against senseless demise  

Underdog is love

Expecting it to lose but it always wins 

Accountability is what change starts with you

Never know what someone else is going through 

Don’t add on to one’s stress and problems

So, the next time you see arrogance against diversity  

Please don’t allow it to continue, embrace diversity

Everyone is different which is great

Capture or better yet 

Imagine 

Aworld where

Love wins

Dawn Allen, Portrait of ChrisSean Evans, Kansas City, March 2019

“Diversity” is inspired by my friend ChrisSean Evans who I interviewed because we both have differences in the community being a minority and having health issues. Us both being black but him having dyspnea and myself having sickle cell disease, we could relate about the struggles of being made fun of racially, but not about our different health issues Therefore I thought it would be interesting to interview him and compare and contrast. During the interview, we discussed his dyspnea, difficult or labored breathing, and how people made fun of him. He explained when one started, more and more people would join in just for the fun of it. In my poem, I stated, “Fearfully looking at the destruction it causes everyone, or I should say most conforms.” Which reminded me of the play “Rhinoceros” and how people comply with the majority with no actual logic behind it. It’s just more comfortable and easier to be with the majority than fight and stand for what you believe in. He also told me how these events made him wish he can change himself, which really upset me. Thus I wrote the poem about diversity, and how it is a beautiful part of life that we should embrace. No one should be discriminated against because of their race, religion, disability, etc. My friend closed the interview by stressing that if someone were to learn one thing about his experiences, it’s to treat others with the same respect you would want for yourself. “Diversity” is inspired by and explains exactly his goal from the situations he has been through.

Time Heals

It’s the best time of the year. The family has come together and we all are excited to celebrate Christmas. I can’t wait to see all of my cousins , aunts and uncles. During Christmas, I enjoy catching up with all of my favorite cousins and learning about all of the new things going on in their lives. We are all almost adults and will be graduating soon. A few of my cousins live in Georgia so it’s always exciting to see and spend time with them again. My cousin ZK , 17 years of age, is expecting a baby soon and we are all happy and excited to meet the new addition to the family. My cousins and I go ice skating every year on Christmas. This year is different because ZK won’t be able to participate. We decide to go anyway to not disrupt the tradition and she agrees to come and still enjoy our company. Here we are, skating, laughing and drinking hot cocoa just like old times. As we skate, I sneak a glimpse of ZK and notices that she’s not smiling and looks sad. So, my cousins and I decide to go talk with her a bit. I proceed to ask her what’s wrong and if she wants to talk about it.  ZK seemed to fake a smile and insist on being okay and not wanting to talk about (00:03). I knew something wasn’t right so I kept trying to get her to talk. She finally just started crying and said, “I don’t know how to talk about it,”(00:10). We all just hugged her and told her it’s okay and to let it out. We wanted her to feel safe and know that we are always here for her. ZK began to sob and say, “I just feel so left out and alone… things are so different.. And I’m already going through enough back home,”(00:20). I wanted to know what she was going through and how we could help. ZK says that, “back home it’s so uncomfortable for me. I get teased at school and I can’t even go anywhere without feeling like I’m being judged,”(00:30). My cousins and I felt so bad and didn’t know what to say. ZK says, “They said all kinds of things like, I’m too young to be having sex, I’m going to be a bad mother because I’m too young, and that I wouldn’t graduate.”(00:37) We all sat there devastated and tried to help ZK calm down as much as possible. We told her to not let these things bring her down and to stay positive. We offered suggestions on homeschooling, and ways that would help her feel comfortable. ZK only had one year left of school so she wanted to stay put and finish it out. We encouraged her to be brave and to not let the things the kids said affect her because we all know it’s not true and that’s all that matters. ZK slowly stopped crying and felt better because of our help(00:45). We asked ZK about her parents feelings towards her pregnancy. She said, “At first I thought they would hate me too, for getting pregnant before graduating, but, unexpectedly, they supported me. They gave me great advice on how to handle these situations, on how to stay positive and they made me feel safe. It really helped a lot knowing they still loved me the same and wasn’t mad at me,”(00:56). We told her that that’s all that matters. As long as your family is by your side, then the opinions of strangers don’t matter. After the talk, we decided to go home. We all knew that this tradition helped us get through a tough time, and we would never forget this Christmas.

Two years later…

ZK is doing amazing. She has more confidence and looks at things differently. We call each other often and I asked her if she was still facing challenges. She said, “The biggest challenge I still face is stereotypes among young, single mothers. I have to deal with people thinking I’m less of a mother because of my age and overall just having to prove to the world that I’m a great mother despite my age and it doesn’t matter how old I am. I love my son and would do anything in the world  for him. I go to work everyday to provide for him. I have my own home and car, and I make sure he goes to school, eats and is well taken cared of,”(05:10). I told her how much I admire her love for her son and how she proves not only to others, but to herself that she is a great mother. I asked her what did she learn from that situation in high school and how did it affect her today: she said, “If i had went to school and those kids didn’t bully me or make me uncomfortable, I feel like it would have made my pregnancy easier. I would have have had more confidence within myself and not have felt insecure every time I left out my house. I think they played a major role with my attitude towards the outside world during my pregnancy. Like I felt like everyone was out to judge me or look down on me so I never wanted to go out publicly. I sometimes didn’t want to post my son on social media because I knew people were judging me,”(06:25). She stated, “I just wish I could have experienced my senior year in a more positive way without being bullied, but I look at these things differently now. I think if I wouldn’t have gone through those tough times then I wouldn’t be as strong as I am today. I think that situation was a blessing in disguise. It made me strong, patient and motivated during my pregnancy. It taught me how not to let things affect me negatively, but to find the good in it. I think it helped me to be a better mother. Honestly, I look at it as fuel to keep me going,”(07:00). We both were able to laugh now about the situation and it didn’t seem to make ZK sad anymore. Instead she was able to talk about it now and let it all out. ZK learned that time heals all wounds…

Deonica Moore, Portrait of Zakori Wright, Kansas City, April
All rights reserved.
Deonica Moore, Portrait of Zakori Wright, Kansas City, April
All rights reserved.


Resonance

How does one describe sound to a deaf person? Conversely, how does one that is deaf describe deafness to a hearing person? I have pondered these two questions all my life having grown up with someone that is almost entirely deaf. From birth, my brother has required a hearing aid to hear due to a developmental malformation of his ear canals. His deafness and awkward appearance has influenced him physically, socially, and spiritually.

My younger brother by one year, Jens Kenneth Benson, was born on February 18, 2000, at St. Luke’s Hospital in Kansas City, Missouri. As the receiving nurse inspected Jens in her arms, her eyes widened and smile inverted. “Call the neonatologist”, she whispered frantically.

In under a minute, Jens was ushered out of the room followed by a jolting slam of the door. Hours passed and the worry in my parents’ minds grew exponentially until a specialist came into the room for an urgent briefing.

“Susan, David, sorry to keep you waiting in this state. We have examined your son and become familiar with the situation.”

“Susan, I understand you are a doctor as well?”

“Yes, an orthopedic surgeon.”

“Splendid. You will be able to better understand what I am about to tell you. Your son has a malformation of his ears and canals. As you can see here, these are photos of his left and right ears:

On the outside, it appears that his left ear is less developed than the right. Inside, however, our X-rays have revealed to us that his ear canals are sealed shut. This means that sound cannot pass through the eardrum and be received by the cochlear nerve, the nerve that transmits auditory sensory information to the brain.”

As my father bowed his head in disbelief, my mother leaned forward with her last ounce of hope and asked, “Will my son ever hear?”

The specialist replied with a relieving smile, “I am glad you asked that, Dr. Bonar. Yes, however, he will require assistance via a hearing aid. We have multiple options for you to-”

“A hearing aid?” pondered my father.

“That’s right. We have multiple options for you to pursue, however, we recommend a non-invasive device starting out. Take a look here:


Jonathan Benson, Jens’ non-invasive, bone-conduction hearing aids, February 2019, All Rights Reserved.

These hearing aids allow him to hear via bone conduction. The hearing aids themselves receive audio signals from the air and convert those sounds into vibrations. They are pressed up against the skull via an elastic band around the head. This allows the devices to vibrate the skull, sending auditory information to the cochlear nerve, and then to the brain. Take these home so he can start wearing the hearing aids after two weeks time.”

My parents and the specialist shook hands. “God bless you,” my mother whispered with a relieving gasp and my father nodded in thanks.


Jonathan Benson, Jens’ at age 3, Kansas City, September 2003, All Rights Reserved.

Fast forward three years and my brother was surviving preschool. He had to wear a headband wrapped conspicuously around his head to hold his hearing aid in place. Classmates constantly made fun of his headband and mocked his hard of hearing.

One time, Jens and a few classmates waited outside the drop off zone for their rides home. “Hey Jens, are you gonna go home and play with your barbie dolls?” a classmate barked.

Jens did not hear. The classmate pushed him on the shoulder and raised his voice, “Hey Jens, I said are you gonna go home and play with your barbie dolls!”

“Wha-? Baby yogs? Hawwy and Kodak?” Jens faintly replied.

“BAR. BIE. DOLLS! Do you even speak english?”

“Jonathan and Jens! Over here!” my mother screamed from the circle drive.

I ran over to the car, swung my backpack into the back seat, and before I could get in she yelled, “Go get Jens. He’s over there. I don’t think he heard me.”

I heard chanting as I approached the scene, “Jens is a sissy girl! Jens is a sissy girl with a headband!”

His face was bright red and was crying, but turned back to normal when I nudged and told him, “Jens, mom is here. It’s time to go home.”

We both got into the car, relieved the day was over. “How was your day at school?” mom inquired.

My brother and I both let out a long, unenthusiastic, “Good.”

“What did you learn today?” she pondered.

I replied, “I made paper mache of dragons and learned about penguins in Antarctica-”

She directed her attention to Jens, “That sounds fun. Jens how about you?”

“Wha-?” Jens replied looking out of the window.

She raised her voice a little louder and looked into the rear-view mirror, “I said: ‘what did you learn today?’”

“I-I learned abou-I forgot. Baby yogs?” he said hesitantly.

“Baby dogs? Did you tell them about Harry and Kodiak?” she replies in disbelief. Harry and Kodiak were the names of our two pet dogs at the time.

“Yeah,” Jens responded with his eyes gazing upon the laughing children pointing fingers at him from outside the car.

Over the next few months, I would overhear my parents talking in their bedroom about Jens’ dire situation. Jens’ current hearing aid was not loud enough for him to hear anything quieter than a shout and my parents were desperate to prevent him from getting held back in school. One night, they were both elated. “I received word back from a doctor that will take our case,” whispered my father.

I could hear my mother jump out of bed and, above a whisper, say, “Oh Jesus, tell me, who?”

“His name is Dr. Niparko from Johns Hopkins up in Baltimore. He specializes in otoneurology and can fix Jens’ hearing for good.” he replies.

“For good? How?” she shoots back.

My father explains in detail, “He says he will have to implant osseointegrated screws into the skull on both sides of the head that will connect to hearing aids. The hearing aids will receive the sound, the screws will vibrate the skull, and then the cochlear nerves will pick up the vibrations. He will be able to hear at the level of a normal child.”

My mother tears in her eyes jumped back into the bed, “Thank God. How soon can we see him?”

Jonathan Benson, Jens’ osseointegrated screw, Kansas City, February 2019, All Rights Reserved.

My father and brother flew out to Baltimore for an appointment within a month and had the procedure done within two. Over the next few years, his hearing drastically improved. His speaking and learning ability returned to their normal levels for a child of his age and he no longer had to wear a headband.

Jens’ social battle with his malformation was far from over. Maturing as an individual, his malformed ears and deafness affected his every choice and related circumstance (6:38). Over the years spanning middle school and high school, he slowly became more introverted and antisocial. He switched many schools and was even held back one year in need of smaller classrooms and special tutoring to compensate for his special condition (1:37). Physically, he started growing his hair out down past his malformed ears in order to appear normal to the outside world. His self-esteem slowly descended with time and by freshman year of high school, he was spending the majority of his days in refuge behind a harmless computer screen in a quiet bedroom.

In contrast to my brother’s disability, my ears were my prized possession. I was an avid guitar player and was playing bass guitar for my high school’s jazz band and pit orchestra. Our disparities and lack of understanding of one another constantly triggered arguments between us two. Below is one instance of our arguments.

I was 17, a sophomore, and my brother 16, a freshman. We were both attending the same high school at the time; however, my brother was struggling with grades and was in the process of transferring to a smaller school. I regretfully remember saying something like this to him, “You’re an idiot. Transferring schools will look terrible on your transcript. I mean, what did you expect? You literally just sit in your room, never cut your hair, and play video games all day. You need to man the f**k up and come out of the closet for once.”

He replied with stray eyes, “You wouldn’t understand.”

I argued back, “Are you f**king kidding me? I put in the work. I made straight A’s and B’s on top of playing multiple sports AND working a part-time job on the weekends.”

The conversation ended with him mumbling, “It’s easier for you, and you wouldn’t understand.”

Overhearing our shouting, my father later that night sat with me in the living room with a baseball game on the TV. “Why were you shouting at Jens earlier?” inquired my dad under the dim light.

“Because he is lazy and is about to make a big mistake transferring schools.” I shot back with disgust.

“He’s not transferring schools because he is lazy.” he explained.

I tested him, “Oh, is that so? When was the last time he came out of his room or cut his hair or got a job? I can’t remember.”

He then repeated the same thing Jens always said, “It’s easier for you. You wouldn’t understand.”

I threw up my arms and argued, “Everybody says that. It’s a cliche. He’s just hiding from his problems instead of facing them, and that’s going to bite him in the arse one day.”

He then laid it all out, “Jonathan, he’s transferring schools because he can’t hear inside large classrooms with all of the background noise. It’s not because he’s lazy. And you were making fun of his hair? Give me a break. You know why he grows out his hair, right?”

At that moment, I successfully predicted what he was about to say in my mind, “He grows out his hair in order to hide his malformed ears,”

He went on, “That’s right. He’s your brother and his brother is the last person he needs making fun of him. It’s about time you hear me out for once.”

I thought a lot about that late night conversation with my dad. He was right. I did not understand because I have two perfectly working ears and a normal body that I do not have to worry about on a “nanosecond” basis (6:38). As a perfectly normal individual by society’s standards, I was able to work and be successful without any special accommodations. In Jens’ case, his disability made it almost impossible for him to find a suitable job or school that would accommodate his disability. In other words, Jens was not hiding from the world, the world was hiding from him.

At the time of writing this narrative, I am enrolled in a class studying Nazi Occupied Europe and the Holocaust. Upon analyzing my brother’s testimony, I have drawn many parallels between my brother and the victims of the Nazis leading up to and during World War II. Hitler’s ethnic cleansing of Germany and Europe not only targeted Jews, but also non-Aryan ethnicities, homosexuals, and the disabled. Just as these people were deemed unfit to work by the Nazis, Jens has also been denied several jobs by society today. He explained that he had to cross out many of his top career paths due to the inadequate level of accommodation available for his disability (10:07). The less tolerant a society is of certain people, the closer it is to committing mass atrocities like the Holocaust by Nazi Germany. Therefore, it is important for a society to adequately accommodate those less fortunate and strive to be more inclusive.

Today I am elated to see Jens thriving. He is now in his senior year at Accelerated Schools of Overland Park, a school that specializes in teaching kids with various disabilities. Not only is he making great grades, but he also has many friends, and holds a part-time job on the weekends. The most memorable part of the interview for me was when he told me that even though his deafness cripples him physically, it strengthens his character and teaches him how to be a better person (23:41).


Jonathan Benson, Portrait of Jonathan and Jens, Kansas City, February 2019, All Rights Reserved.

A Limb Of Hope

Nicole DeGroff, Mariah Gabrielle, Springfield, MO, All rights reserved.

Adolescence is a hard time for anyone. You’re learning how to navigate the world, discovering yourself as a person and how life works in general. All the while working through challenging changes throughout your life. It’s a hard and difficult time for anyone, but for Mariah Gabrielli, she has her own unique struggles to add to the list. At the age of seven, a stage where fitting in and making friends is a prime aspect of a child’s life, Mariah was diagnosed with Osteosarcoma, a form of bone cancer that would eventually result in the loss of her leg. “I was diagnosed in November and they told me I had stage four cancer, and that my chances of survival were really low,” Mariah explains (00:07). Mariah’s tumor resided in her knee, causing her leg to be “almost triple the size it needed to be” making Mariah’s illness very visible and giving her something that separated her from all the other kids (28:59). It didn’t end there for Mariah. After seeking out options to cure cancer, even suffering month after month on Adriamycin, one of the strongest forms of chemotherapy, it was clear to doctors her tumor was not going to shrink. A decision was made by Mariah’s family and doctors that amputation was the best option to ensure her the best chance of survival. Even if it meant losing a few friends along the way.

She did, in fact, lose friends along the way. At the age of seven, friends are everything. For Mariah, her closest friends came in a group of three. They did absolutely everything together. Hung out on the playground together, played on the same soccer team, sleepovers on the weekends, all normal things that seven-year-old girls would do. It seemed as if nothing could tear them apart; until Mariah’s amputation came along. Sitting down with her friends at lunch, a daily tradition, Mariah informed her friends that she would be going down to Texas, the location of her amputation specialist, to get her leg cut off. One friend in her group did not take the news well, “she stopped talking to me afterwards,” Mariah recounts on the reaction (28:59). All because of an amputation, not even the amputation itself but a simple conversation. Mariah’s world was changing and there wasn’t a thing she could do about it. “It’s not something that I could have ever controlled,” she says on the incident.“ I was dying of cancer, what else did you expect me to do? I’d rather lose a leg than die of cancer. So, I mean, that’s what we did,” so amputation it was, and onset the many challenges Mariah would come to face (28:59). Both with her leg and the people around her.

We all know kids can be mean. Mariah has had her fair share of experiences with bullying when all she wanted to do was be just like all the other kids. As a fifth grader, that phase of thinking boys have ‘cooties’ is starting to fade. No longer are boys these gross, messy creatures that would be better off on Jupiter to get stupider, as the saying goes. No, girls start to form crushes and fantasies of what their ideal ‘relationship’ would be. Mariah being no different. During her fifth grade year at Brookridge Elementary in Overland Park, Kansas, Mariah had a crush on the fifth grade ‘it boy’. “For me, he was like the cutest boy in school,” she gushes. “I chased him around everywhere, all the girls chased him around,” she continues on (7:42). Sounds pretty normal, right? Chasing around that cute boy on the playground in hopes of gaining his attention? Mariah did, in fact, gain his attention. Only to after wish she hadn’t. Her disillusion of thinking she could fit in and be like all the other girls in her grade began to change. This kid, that had caught Mariah’s interest, responded to her in no way he had to any other kid, by continuously calling her names. While she can no longer recall the names today, his words left an effect on her. She emphasizes “I’m not a physical person at all, but it got to the point where, after a while, I hit him,” she explains on the kid’s effects (7:42).  

SOAR, Mariah Gabrielle and Taylor Gabrielle, SOAR, All rights reserved.

These are just kids though, right? I mean, kids are always going to be judgmental. It happens to everyone. Does it always happen at home though? For Mariah, this was the case. After being cancer free and adjusting to her new life as an amputee, Mariah began to experience conflicts at home. It is no secret that medical bills are expensive. Surgeries and rounds of chemo are sure to rack up quite the large sum of money and caused a strain on Mariah’s parents. However, it was Mariah who faced the consequences. After two years of being cancer free, she recalls “my parents actually started being very physically abusive to me,” that she later, after doing some digging with a social worker, was stress related to her medical bills. As a scared fifth grader who had no idea how to handle this situation at home, she turned to her school guidance counselor. “In middle school, they always tell you if something’s wrong at home, you can come talk to a counselor,” she explains, and that’s exactly what she did. However, Mariah’s revelation of what truly was going on at home did more harm for her than good. That night, after the counselor had called her parents to check up on whatever was going on, She recalls coming home from school that night ready for dinner with her dad, step mom, and step sister. “My dad made dinner and then he set three plates on the table and set one on the floor. He basically told me that ‘if I was gonna act like an animal, that I was gonna be treated like an animal,” all because Mariah went to talk with a counselor. Not long after, Mariah was removed from her parent’s custody and put into the foster care system. This left Mariah feeling depressed, disappointed, and confused. To the ten-year-old, she believed she was sent away because her amputation left her unloveable. Left her no better than the animal her father claimed she was. Recounting back on her feelings, she says, “It was just really hard to hear that something like that could change the thoughts and perspectives of another person. And to be treated so harshly over something that I couldn’t control,” (12:01).

From then on, Mariah went about doing everything she could to eliminate her differences from everyone else. Easier said than done when the very thing you are trying to deny is attached to you in a very physical way. So, she did her best to hide it, stating that “I never wore shorts, it was always jeans” (3:10). The only way she had to try and limit her individualism. No longer was her amputee a thing she needed to get by in life, but it “became kind of a hidden burden” that she felt she needed to hide away (3:10). Is this the life Mariah was destined to live? Feeling so ashamed of who she is she feels the need to hide a part of who she is?

At this point, Mariah realized she couldn’t just go on rejecting this huge part of her life. It was a part of who she was and it was time that people accepted that. Both others and herself. So that’s what she did, through a process of many ups and downs. “The transition period was…very rough,” she begins (10:31). “It’s the one day ‘ok, I got this, I’m going to tackle this day, and not let people tear me down,”  to the attitude of “everyone is killing me” that varies from day to day (10:31). The days where everything is great, there is this self-confidence of walking out the door in a pair of shorts, to a split second change of everyone is staring. What are they thinking? How are they going to react? “You internalize things. It’s like, well this person is looking at me differently than this person. Well, what’s the difference between the two?” Which person should she avoid (10:31).

SOAR, Mariah Gabrielle, SOAR, All rights reserved.

This adjusting and getting back to feeling herself again was not an easy task. Especially for someone who goes “from your normal and fine” to someone who’s different (9:09). Something that has not always been the case for Mariah. “That different effects you, makes you feel like you’re not like everyone else. It makes you feel like you’re not worthy, that something’s wrong with you,” even when there is nothing wrong with her at all (9:09). Yet she has the opinions of society spinning round and round her head convincing her otherwise. An opinion that has been spun around all throughout history. This thought that those who are disabled are weak, and not contributors to society. At its high point of discriminatory actions, right after the rise of Charles Darwin and his theories of survival of the fittest, the handicapped were highly depicted against and were told not to reproduce. To take this a step further, the handicapped would be taken and locked in the back of a truck where they were to be gassed and killed off with carbon monoxide. So though actions from people today are not nearly as passive today, it is clear from Mariah’s experiences that prejudice still exists. A prejudice that Mariah herself, through years and years of fighting against the hateful views, is learning to fight against and find love for herself again.  Now, after years, Mariah is finally at a place where she can be confident within her own skin. “I think that it’s funny because I’m just like anybody else. Just with different looks, ya know?” She says on the matter (6:13). While she knows she cannot change the minds of everyone, that there is always going to be that one person who is going to put you down, she wants to help bestow her newfound confidence in others. “getting through it is definitely the hardest part. And finding strength within yourself is definitely the hardest part,” she explains to, not just those in the same situation as herself, but to anyone feeling down on themselves (15:54). “As soon as that stage has passed and you find that you are a worthy human being, and should be treated just like everybody else, you find confidence,” the end goal she hopes for everyone to think about themselves (15:54).

While Mariah’s views on herself have definitely taken a positive upswing, she still runs into issues revolving her amputation. Specifically regarding other’s low opinions of her. “I can’t think of how many jobs I’ve applied for and haven’t gotten a response from because, ya know, they look at my profile and they see I have a disability and they don’t think I can do the job,” she stresses (17:57). Without even having a conversation with her, without checking over any of her qualifications, Mariah is written off simply because of her disability. Even if the job doesn’t require anything that has to do with the condition of her leg, the fact that one is missing disqualifies her from being called in for an interview. As if it’s a fact that having an amputee affects the way a person’s brain works. “every day you hear, like, people downplaying you or something and so, I just try and fight it and say ‘I got this’ out loud and definitely inside too,” (17:57).

So how is it these people who struggle to find decent paying work are expected to better themselves? Pay for these expensive, extravagant surgeries, medications, and legs to help them “to ‘be normal’ to fit in with society” (23:38). In today’s economy, a basic, standard leg-” a leg that locks at all times and doesn’t bend”- starts at fifteen thousand dollars (24:44). “People don’t get the things they need. They just can’t afford it. So they’re stuck in a wheelchair the rest of their life because they can’t get the help that they need” (25:12). With the way healthcare is within the United States, coming by the things a person needs to live as healthy and normal of life seems nearly impossible nowadays. For Mariah, who previously had all her medical expenses covered through foster care, currently finds herself at a loss.“Being out of foster care and being eighteen, well, I’m expected to pay for everything” (26:58). As a young, fresh out of high school eighteen-year-old girl, finding a job with decent benefits is nearly impossible. Add in the factors that her amputee disqualifies her from getting accepted into a good paying position, Mariah finds herself struggling. Unable to afford an insurance plan, as her amputation sends her rates through the roof, and making too much to qualify for Medicaid, she is left without coverage. “I’ve got a $40,000 leg that I’m walking on every day. If a part broke on it, that’s $5,000 out of my pocket. So that’s just crazy,” she explains (26:58). “Why is something that I need to be able to quote on quote to ‘be normal’ to fit in with society out of reach?” (23:58).

Nicole DeGroff, Mariah Gabrielle, Springfield, MO, All rights reserved.

The loss of her leg has had such a huge impact on Mariah’s life. Both for the better and for the worse. She’s had many issues from the people within her life, the general public, and problems within the system. Despite the hardships, Mariah is still managing to come out on top. Mariah has seen so many changes within society, through awareness from movies like ‘Soul Surfer’ and ‘Dolphin Tale’, she knows there is still a long journey ahead. With this issue of awareness and acceptance, Mariah says that “something that I wanna do, actually, is start more movements, and travel, and speak to millions of people if I can one day,” in hopes of making the world a better place for people with impairments (21:06). Mariah is a role model and an inspiration to the world around her who has the potential to make a wonderful impact on the world around her. To start in her journey, Mariah frequently volunteers with sick kids battling through cancer and amputees, similar to her own, in hopes of raising their spirits and creating confidence within them. Her efforts have made impacts on the lives of so many kids she has come in contact with. This being a great start in her efforts to change the world for the better.  

Nicole DeGroff, Mariah Gabrielle and Xavier Sikes, Olathe, KS, All rights reserved.

Hearing Became a Curse

There is a tall, thin high school freshman with big blue eyes and shaggy dark hair. He appears to have it all, good looks, confidence, and a strong sense of self. However, if you look closely under his mop of hair, he wears hearing aids. It is the only physical sign of his hearing impairment which has been a source of discrimination and bullying throughout his younger years. In his own words, “I am hearing impaired and because of that I have a speech impediment and been bullied for it” (01:03). Thankfully he had the support to overcome his hearing impairment, a luxury that was not afforded to the those like him, or in similar predicaments, throughout history. For proof, look no further than Nazi Occupied Germany. In their attempt to fulfill their vision of a perfect society, they discriminated against those with physical and mental differences or disabilities through sterilization and systematic killing.

James Higgins, Portrait of a Male Holding Dyslexic Sign, Kanas City, February 2019, All
rights reserved. 

The young man in the story above is not some fictional character in an anecdotal story designed to highlight the all-encompassing nature of the Nazi’s destruction of life. He is a living human being. He is my younger brother, which amazes me because he is hearing impaired and I have perfect hearing. He has been hearing impaired since the day he was born. He started having ear infections starting as early as six months. Between the ages of nine months and seven years old he had seven ear surgeries. He has also had multiple vestibular tubes, close to a dozen, inserted into his ears in an attempt to limit his number of ear infections. He said, “I have been in speech therapy since before he can remember” (1:35). This was done to improve his speech, which was impaired as a result of not being able to hear. Dealing with the complications and health issues that come with having poor ears was such a commonplace part of his life, he and his parents didn’t realize he was hearing impaired until second grade. He explained, “I didn’t know I was hearing impaired because it is how I always heard. I didn’t realize it until second grade when we started doing a bunch of spelling tests and it got very difficult for me and I wasn’t doing very well” (01:35).

Two questions must be asked in order to understand why this would occur. The first being why would they do this? Are they intentionally malicious, and believe that people different than themselves are inferior, or do they simply not know better? If they do not know better is it because they are a byproduct of an ignorant environment? The second being what triggered these individuals to act out in this way? Was it because the hearing aids formally marked their classmate, my younger brother, as different and therefore he was an easy target, or rather was it because the hearing aids were unique to him and marked him as an individual in a sea of conformity and therefore made them (the perpetrators) uncomfortable?

Caiti H, Discovering ideas about Red Hearing, Kansas City, April 2019. All rights reserved.
 

The bullying and discrimination he faced was multi-faceted. “I was left out of game and from playing,” he reflected. “They would play kickball, football, and basketball and they wouldn’t let me play. If I tried to play, they would start making fun of me and then make sure I never got to touch the ball” (08:03).

Katherine Lee, Signs of Kindergarten Bullying, 13 December 2019, Verywell Family,
April 2019. All rights reserved.   

He thought back to a specific time in fifth grade and remembers the mental impact the discrimination took. “There were these twins,” he said, “they started making fun of the fact that I wore hearing aids. They started being really mean, like verbally abusive and I just ended up getting actually depressed” (4:32). Because I have an identical twin brother as well, I can speak to why these twins might have bullied him. As a twin, you feel constantly compared. At times it can feel like a competition to see who the superior copy is because people forget that even though you look the same, does not mean you are the same people. Therefore, these twins might have bullied because they felt resentment that they were not treated with respect to the fact they are unique individuals. 

The bullying affected many aspects of his life, including his physical and mental health. He came to believe that perhaps he really wasn’t equal to his peers. “I felt bad, like something was wrong with me, like something was wrong with me, like it was all my fault. Why is this wrong with me. Why are they so much better than me?” (05:41).

The psychological stress caused him to be ill frequently. Ultimately, bullying and discrimination affected his mental and physical health to the point that he needed to switch schools. And he did just that between fifth and sixth grade. The difference that being in an environment where he was accepted for who he was, regardless of the fact he had a physical disability, was monumental. “I moved schools and I started becoming self-dependent,” he recalled. “It made me realize that my hearing is not something I have any control over, so screw what they think. I am my own human being. I am my own person. I can be whoever I want to be, and it doesn’t matter what others think” (15:07).

James Higgins, Portrait of a Male Covering Ears, Kanas City, February 2019. All rights reserved. 

Four years later, as a freshman in high school, he is in a much better space mentally and physically. He has accepted and embraced the fact he is hearing-impaired, “I look back on the time where I was bullied as a very dark time, but there is a part of me that is very thankful for it because it helped me grow as a person and made me stand up for myself” (06:31).
He said his battle with discrimination helped make him a better person, “I would say I would not be the same person if I didn’t go through it, and I wouldn’t get rid of it because it gives me my individuality. I just wish I had moved to a more supportive place sooner” (14:03). He also stated it helped him learn a number of life lessons, “Being hearing impaired has helped me weed out the people who say they are my friends but actually are not. The people who [see past my hearing and speech] are such great friends. They like me for who I am, the person I am, not my abilities or what I have” (12:53).

James Higgins, Photo of a Hearing Aid in Ear, Kanas City, February 2019. All 
rights reserved. 

He said his battle with discrimination helped make him a better person, “I would say I would not be the same person if I didn’t go through it, and I wouldn’t get rid of it because it gives me my individuality. I just wish I had moved to a more supportive place sooner” (14:03). He also stated it helped him learn a number of life lessons, “Being hearing impaired has helped me weed out the people who say they are my friends but actually are not. The people who [see past my hearing and speech] are such great friends. They like me for who I am, the person I am, not my abilities or what I have” (12:53). He added that anyone who was or is in a similar situation is “to not listen to other people. Who cares what they think, don’t worry about them. Be the best you that you can be” (15:07). 

My Friend Jill

I first met my friend Jill quite recently, actually over this past summer. We were both in the same summer program here at UMKC, and over the course of the whole thing we ended up becoming really good friends. We have spent a lot of time together over this school year and in that time I’ve come to learn and understand a lot about her and her life. So obviously when I had to interview someone from a different background I choose her because we are so close and at the same time very different in many ways. Jill is from St. Louis and is half Filipino since her mom, who was adopted into her family, is fully Filipino and her dad is white. Naturally, this is very different from my racial background, being a white guy from Kansas City, so she has had a very different experience growing up from me. Over the course of my interview with her, she told me about many different events in her life and the main thing that stood out to me was how people, like her classmates, treated her at school since she was half Filipino. When I asked her if she could think of anytime she was treated differently because of her race her mind immediately went to her early school life. Jill had gone to a predominantly white school and she claims that about 7% of the kids at the school were in a minority group and that out of that 7% she was the only Filipino one in the bunch. She always felt like she never really had a group to fit into like the other kids of color who all had there own little cliques and this made a big impact on how she acted throughout these years and what she thought of herself. She described in detail how she would usually try and tag along with the Asian girls in her school since they were the closest thing to Filipino. The problem was in many Asian communities those who are Filipino are seen as the lowest of the low and treated as less than the other Asian racial groups. Almost every day some of her “friends” would make racial jokes at her expense or make comments on how she looked. She would often laugh along with them and make these same jokes herself. She did this in order to gain their approval and to continue to be there friend. She explains, “To some extent you get desensitized and you rely on your sense of humor just revolving around making people laugh” (interview transcript 4:30). This sort of cycle continued well into her years in high school and as she got older she realized more and more how much she didn’t like being made fun of because of who she was. She began to look more into what exactly it means to be Filipino since she and her mom are the two only Filipinos in her whole family. She told me how she started to take pride in her heritage and would tell her friends to stop making those jokes. She admitted that at this point because of her change in opinion she drifted apart from her high school friends but she believes that this was a good thing and showed her who her real friends were.

Illustration drawn by Jill during the interview, All rights reserved

After hearing Jill recount her earlier years in school I was immediately struck by how different yet similar our two experiences were. You see, from a very young age, I was diagnosed with two learning disorders known as dyslexia and dysgraphia as well as an allergy to peanuts. I went to a very small private school and was the only kid there who had these disorders and an allergy. Right from the getgo, like Jill, I was seen as different from all of my other classmates. Often people would make jokes about how I couldn’t write or read as good as the other kids in my class since both of my disorders affected reading and writing. My handwriting to this day is barely legible to anyone other than myself and I learned to fluently read a whole year behind my classmates and still make spelling and grammar mistakes regularly. My classmates would frequently comment on how I couldn’t eat peanut butter and at times would often flaunt it in front of me mocking how I cowered away from it. Needless to say, like Jill, I never experienced a feeling of comradery or friendship in our early years at school. However, we both still had vastly different experiences through life as I could hide the things that made me stand out where she never could. Her story deeply affected me and made me reflect on all of those previously mentioned experiences in my life. After the interview, we talked about it and how in grade school kids would often treat anyone who was different from them and had no group to associate with, with borderline malice. In a way, it makes sense since children will often feel threatened when presented with something they haven’t seen before and try to stay as far away from it as possible. However this in no way justifies this behavior, as no one in any circumstance should be treated unfairly and poorly because of there differences and unique qualities. We both also wondered if things have changed and personally I believe they both have and haven’t changed simultaneously. I feel that when it comes to discrimination based on race things have improved if only by a small margin. But when it comes to bullying I feel that if anything that it has gotten worse. In person and physical attacks may have decreased but with the popularity of social media and the online world, many youths will bully and discriminate online. Scroll to any comments section and there is a large wealth of evidence for my claim. By hearing Jill’s story I got some more enlightenment on my life and the things I have essences as well as others and how they have been treated.

Illustration drawn by me after the interview, All rights reserved.

I feel that the piece of literature that best connects with this story is the graphic novel “Maus” by Art Spiegelman. In this graphic novel Spiegelman recounts the story of his father’s life during the Holocaust and the trials he had to face. As you may have guessed Arts father experienced much discrimination and unfair treatment for being Jewish. Like Jill, he was treated differently and negatively due to his race and things about himself he could not help. Now, unlike Jill, in many situations Arts father had to deal with the threat of being hurt or killed or having his family taken away throughout his whole experience. He also went through the awful experience of living in a concentration camp for a long period of time and seeing his family members and friends get killed. Despite this, his story and Jill’s share striking similarities. The biggest one to me was the fact that both Jill and Art’s father had to try and fit in and hide who they were in order to be accepted by their peers and stay safe. I find it very interesting how three completely different stories can have many things in common.

Zach’s Story

Imagine being an 8-year-old kid and being so thirsty that you can’t stop drinking water and it physically hurts to drink that much water. Well, this is what happened to a friend of mine, Zach Littell. His story is much different than mine. In terms of race and able-bodiedness, Zach has gone through life with being Type 1 Diabetic and has faced many challenges in his job to move up because of his diabetes.

Debora Rodriguez, Portrait of Zach Littell, Grain Valley MO, March 2019, All rights reserved.

I had the pleasure to see Zach on March 1st when my husband invited him out to eat dinner with us and catch up. We hadn’t seen Zach since our wedding day, so it was nice to get together to talk. As we talked, I could hear a growing frustration in his voice when he started to talk about his diabetes and how it has been impacting his life differently.

Zach has Type 1 diabetes which is also referred to as juvenile diabetes where it most often happens in kids and where there is a complete absence of insulin in the body. This is often confused with Type 2 diabetes where it can be hereditary or brought on by different medications where it hurts your pancreas and causes trouble with your pancreas producing insulin. It can also be where you have an unhealthy diet, excess weight, and a lack of exercise and don’t take care of your body so your pancreas cannot produce enough insulin to keep you going. Zach also described Type 2 diabetes to me where he said, “Type 2 diabetes, there are two types of type 2 diabetes, there’s the first kind which is hereditary and there’s the second kind when you get fat and don’t take care of yourself or don’t have to technically be fat or you just don’t take care of yourself, you eat too much sugar and then your body can’t produce enough insulin.” (09:30)

I was curious to hear about Zach’s frustration with his diabetes since he’s had it for 15 years now. Zach works for FedEx fixing tractor trailers and he also works for UPS as an hourly warehouse worker under the union Teamsters where he gets his great health insurance. He explained to me that he cannot move up in his job unless he has a CDL (commercial drivers license) and he cannot get one because of his diabetes. While we were talking Zach said, “I talked to my doctor and she said that she would clear me to pass a DOT physical so I can get a CDL but said I can’t go low as much as I do because I go low fairly often but my body handles lows a lot better than it does being high, like I’ve talked to other people and they say: ‘oh when I’m at 50 I can’t—I can’t walk, can’t move, I just sit there and see stars and stuff.’ And that doesn’t affect me in that way. I’ve gone down to below 20 before and the meter actually says below 20 because it’s too low for it to read and most people pass out and die if they get their blood sugar that low and I was like—70%-60% there, and I was able to get myself food and eat and everything” (03:46). From Zach’s viewpoint, he believes that he handles his diabetes better than others and feels he would be okay doing the job.

I then asked him, “So you’re thinking maybe even the way that the CDL is tested is maybe not right or should be changed?” (04:20). He responded with saying, “I think it just depends on the individual and for sure yes I need my blood sugar to be better but it is extremely hard to get it better because right now, I work 60 hours and I don’t exercise but if I could get a job and only work 40 hours a week then I would have time to exercise” (04:20). Zach is unable to get his CDL (commercial driver’s license) because his diabetes has restricted him to do so.

Zach’s job at UPS gives him amazing health insurance to cover his medications and medical equipment for his diabetes. At one point, Zach pulled out his diabetes kit and picked up his insulin and said, “$120” (12:38). He then picked up his test strips and said, “Test strips. Each one of these costs $1.75. They can only be used once. I check my blood 8 to 12 times a day so that’s almost 20 to 25 bucks a day, but I’m fortunate enough that I go fill my 3-month prescriptions and it’s like $5,000 and I pay $0 because I have great health insurance” (12:38). That was a powerful moment because the harsh reality is that not many people are fortunate enough to have this great of health insurance. Even if someone has semi-good health insurance, they still may be paying thousands for diabetic medication and equipment they need in order to survive.

Debora Rodriguez, Zach Littell’s Diabetes Kit, Grain Valley MO, March 2019, All rights reserved.

In addition to this, Zach talks about a very big problem that is happening right now in our society. He goes on to say, “Pharmaceutical companies take extreme advantage of people with diseases that require them to go to the pharmacy and buy drugs so they can live, so the pharmaceutical companies jack the price up astronomically high and they do it because they can and no one’s stopping them. There’s only a couple manufacturers that produce insulin so they have a monopoly or oligopoly and they have a captive audience so they can charge whatever they want” (11:56). Pharmaceutical companies try to take advantage of people because this medication is a necessity for the survival of diabetics.

Debora Rodriguez, NovoLog® Insulin, Grain Valley MO, March 2019, All rights reserved.

In my class: Nazi-Occupied Europe & The Holocaust, we talked in our lectures about the T4 Program. It was also called the T4 Euthanasia Program, camouflaged by the Nazis to kill incurably, physically or mentally disabled, emotionally distraught, and elderly people. These people were murdered by way of gas delivered by specially-outfitted vans. This was done before the liquidation of the Jews began. The Nazis essentially experimented with both how to kill large numbers of people most efficiently and how the general public (and the people doing the killing) would react (Bergerson, Levy NOE, SP2019).

As I was talking to Zach, I asked him, “Before you were diagnosed, was there ever a time that you thought you were diabetic?” (14:46). He responded by telling me a lot of interesting stories from his childhood. One of the stories that he told me went like this: “I didn’t even know what diabetes was at that age but I remember like two days before I got diagnosed we came back from a barbecue place, I got home and I drank so much water because I was so thirsty that my stomach like it painfully hurt like it hurt, it really hurt, and the reason this happens with diabetes is because the water won’t go into your cells without insulin so the water goes straight through you instead of going into your cells and your cells are so dehydrated so you’re just peeing it out two minutes later” (17:13). This story really stuck out to me because I learned that there are more symptoms of diabetes than just having low blood sugar and fainting. Other symptoms of diabetes that many people do not know about include excessive thirst, frequent urination, sudden weight loss, and weakness. Many people in our society don’t have a clear understanding of what diabetes truly is and the symptoms that come along with it. We as a society need to be more informative so we are able to help others if we notice these symptoms.

Another story that really surprised me was when Zach said, “Oh another funny story, this was the summer that I got diagnosed and I woke up in the middle of the night and I really had to pee, so I went into the bathroom and could not find the toilet, the toilet was not there, so I climbed out the window onto the roof and the roof is pretty flat so its something you can walk on, so I climbed to the edge of the roof and I peed off the end of the roof. It turned out that my blood sugar was really, really, really high” (19:04). To be an 8 or 9-year-old child and have your blood sugar so high that you hallucinate that your toilet isn’t there and your only option is to urinate off the roof is unbelievable. After being diagnosed, Zach then knew the reason why this happened. He started taking the medication that was prescribed to him and was able to not have these hallucinations anymore. Zach now knows as an adult how to take his diabetes medication when needed responsibly. This is why not being able to move up in a job, because of his diabetes, frustrates him so much because he knows that he is capable of doing the job and take care of his diabetes.

Before Zach left, I asked him, “Do you fear that UPS will ever take away your insurance?”(20:15), and this is a really important question because if he doesn’t have this amazing insurance then he would have to be ridiculous amounts of money to be able to get the medication he needs to live. Zach not being able to move up in his job because he can’t get a CDL is worrisome because he feels trapped. He is trying to find a job that he likes and can succeed in but will also cover his diabetes equipment and medication. Zach answered by saying, “No because UPS is Union and Teamsters is the largest labor union in North America so they have a substantial amount of poll plus UPS is a good company to work for and they take excellent care of their employees so you have a company that wants to take care of its employees in a union that wants to make sure its member are happy so I really don’t fear that”(20:17). Zach is the type of person that is a very hard worker and knows that he is very fortunate to have people around him that support him and love him like his family and friends and will keep encouraging him throughout his journey in life as a diabetic.

The Art of Attitude

Sherri Collins, photo of Michelle DeWeese and Gavin Collins, Wellington, Mo, 2017, Copyright Free

“So, where did you grow up?”(19:44) I asked Michelle DeWeese, a woman I consider a good friend and a role model. “I grew up in Denver, Colorado. It was a big metropolitan city where I was exposed to Black, White, Chinese, single parents, married parents, rich, poor – I saw a little bit of everything, and that was to my advantage.”(19:56) Michelle is different than most as she tends to look at the bright side, even when things have not necessarily gone her way. Intrigued, I asked, “What words would you use to describe your differences?”(00:09) Michelle then went on to tell me, “My handicap can be described as a birth defect, that was discovered when I was four years old, and the technical name for it was cerebral palsy.”(00:13).

Chart, Types of Cerebral Palsy, 2018, Copyright Free

When I first saw Michelle, I was eleven years old, sitting in church with my mother. Michelle walked by, using two crutches, and moved all the way to the front. I asked my mother why she had to use crutches, and this is the first I had known of anyone with a birth defect. My mother explained to me that there were people that had certain limitations and could not do everything that I could. She told me to be thankful for what I had and not to treat people with handicaps any differently than I would treat anyone else.  I thought, “How did she play sports and run around with her friends when she was a child?” At that moment I was very thankful for the childhood that I had lived.

Sherri Collins, Michelle DeWeese in 2018, Lexington, Mo, Copyright Free

Michelle loves to watch sports, especially when the people she loves are involved. When I asked her about her childhood, she still gave me no negatives. She said, “I had a very positive experience, because being highly verbal, I was a hospital representative for, I guess you would call it poster-child type stuff, for the children’s hospital in Denver, Colorado.” (2:20) While she spent quite a bit of time in the hospital dealing with six surgeries over ten years in her childhood, she has not allowed that to hinder her ability to make friends, and enjoy life. Michelle explained to me that she had three older siblings who didn’t treat her any differently, and that helped her fit in. I personally did not grow up around anyone that was too different from me, and I wondered if she had faced any adversity at school because of her race, African-American, or because of her disability, but again, she gave me only the positive side of the story, “I was in a school for handicapped children and I was not in a mainstream public school. There were nurses and an underground tunnel to the hospital, and there were rest periods, and children of various illnesses, so that’s who I was around most of the time.” (1:03) When I see people with differences, I think of all the challenges that go along with it. I think of people that have been through tough times just because of what they look like or what they believe in. In a book for the history course called Maus by Art Speigleman, Artie’s father survived the Holocaust and suffered through several problems with guilt even after the oppression was over. I wondered why Michelle wasn’t telling me how bad her troubles had been, but only the good things that have come from her life. Later, I got the explanation. Michelle told me, “My mother did not allow me to accentuate my differences very much at all.” (2:20) Michelle’s mother played a huge part in the way that she carries herself. She explained to me that, “She did not let me focus on it. I was not the center of the world.” (8:10) Her mother knew that she was different, being that she was handicapped, but she also knew that her race would be an issue in society as well. “My mother did not allow my race to be a difference. She deliberately asked excellence of us, because she knew that the race issue was already there.” (17:53) I began to wonder about her mother, and why she raised her children to be so tough and to not give in to what the world told them about their differences. Michelle then explained to me, “My mother was raised in the deep South and she was mixed race. And so she saw a lot of the, if I have my history timing right, she saw a lot of the separate water fountains, black and white differences growing up than I did.” (18:33) Her mother, “set out to give us a bigger world than she experienced” (19:35).

Racial Equality, 2018, copyright free

I believe that Michelle has made the most of her life. After earning her Bachelor’s degree in Psychology, she went on to earn her Master’s degree in Divinity from Northeastern State University. Earning her degree did not come without challenges. She said, “At one point I was discouraged from getting my Masters because an administrator felt I didn’t have the money to be in the school, but I went to the school with vocational rehabilitation and ended up getting my degree.” (3:17) Despite the outside pressure, Michelle feels that the biggest challenge she faces is within herself. I believe this is true for most people. Humans have a natural need to belong to something bigger than themselves, and it can be a lot tougher to fit in when you have an obvious difference. One obvious example of this is when Jewish people were trying to find their place in Europe in the early 1900s. They were oppressed by every single group of people that they tried to fit in with. With Michelle, her challenge was not comparing herself to others. “Recognizing that dreams that I had for myself were not going to be.” (9:00) This quote from Michelle made me look at my own life and realize how lucky I am to be able-bodied and to be able to achieve the goals that I have set for myself. Michelle has not allowed her limitations to keep her down for very long. She lives independently and functions in society very well. I asked her if she had any hobbies, and she gave me a great response. Her hobbies include “going to the gym, watching people that I know in sporting events, and attending live concerts.” (24:21) I have never heard of a person with cerebral palsy being able to work out. She explained to me that going to the gym relieves stress for her. Michelle has come to watch me play basketball several times when I was in high school, and I think I finally understand why. When I asked her what her favorite memory was, she answered with this, “I think I like most of all watching you, your senior and junior year was a lot of fun. [Tears run down her face] because it allowed me to go back to high school for the good stuff. Just watching you live life, play basketball, hang out with your friends” (26:50). I believe that Michelle loved watching me so much because when she would see me running down the court, or shooting a basket, she could experience the sport through me. Michelle really showed me that being single, African-American, handicapped, or whatever difference one may have, does not mean that you can’t enjoy life. It just means that you have to try a little harder, create meaningful relationships with the people around you, and have a positive attitude along the way.

Madison Bolten, Michelle DeWeese and Gavin Collins, 2019, Lexington, Mo, Copyright Free

Everyone is Different

“Everybody has a challenge […] we all have something” (10:10). My mother’s challenge is hearing impairment. Since birth, she’s not been able to hear from her left ear. Because her impairment prevents her from hearing her voice, it sounds different from most. Her hearing prevents her from being able to distinguish voices in a group, particularly higher pitched voices.

Bobby Plubell, portrait of my mother, Childhood home, All rights reserved.

Having hearing impairment comes with quite a few challenges. As a child, my mother would always have to make plans to sit closest to the front of class in order to be able to hear (1:13). In a group of people talking, it’s super difficult for hear to distinguish voices. She says, “Another issue that was always hard for me was being in a group of people, because I couldn’t usually hear anyone unless they were right next to me” (1:26). Having hearing impairment is quite difficult to deal with, especially from a young age. Other children would frequently tease and belittle her going as far as simply ignoring her.

As an adult, my mother still faces some discrimination and other challenges. She said “My biggest challenge now […] being a person with hearing loss – even people that are very close friends do this, and I don’t know why, but just talking over me. You know, as if I’m not only deaf but stupid too” (23:33).  People are very quick to make assumptions and judgements based simply on how someone looks or sounds. It seems like there’s a tendency to assume that people with disabilities are also mentally disabled. This led to teasing and bullying in school. My mother said during my interview with her, “Everyone’s so self-conscious at that age [middle school] anyway so there’s a lot of bullies and whatever. If anyone’s the least bit different they pick on you” (7:51). Because of the difference in how my mother speaks, she tended to be picked on or discriminated against in school. In particular, being in a group of people made it worse. She says “If people knew I couldn’t hear or whatever sometimes they would just ignore me or talk over me or something” (01:60). The effects of this continue on to this day. When I asked about how the teasing affected her she said “It affected me pretty greatly. I mean my self-esteem, and not feeling valued or important enough for people to like not talk over me or for them to repeat themselves or something” (02:22). Lack of empathy and understanding from her classmates here led to feelings of alienation and self-consciousness that still have an effect today. People don’t realize the extent of the consequences their actions have.

Despite this, there are certainly some social issues that come along with being a parent of someone with a disability like Down syndrome. My mother said “Sometimes parents are just nervous to have their kids around somebody who is different. And I just never felt like we were in the mainstream of everything” (17:38). Fear of the unknown mixed with a lack of widespread education about different disabilities seems to cause discrimination and distance between parents of children with disabilities and other parents.

Lack of understanding combined with misinformation seems to be a significant contributing factor to discrimination and fear of a certain group. This can be seen in the graphic novel Maus, by Art Spiegelman. In the novel, Spiegelman’s father Vladek details his experiences during the Holocaust. When describing how non-Jewish people were taught to relate to Jewish people, Vladek explains that “the mothers always told so: ‘Be careful! A Jew will catch you to a bag and eat you!’ so they taught to their children” (Spiegelman, 149). A common myth about Jewish people during the Holocaust is that during the Passover, they need the blood of Christian children in order to make matzo. Obviously, this is absurd and is simply a result of misinformation and lack of understanding. In the book and during the Holocaust, this led to discrimination, just as it does currently with people who have disabilities (to a different extent of course).

People tend to fear what they don’t understand and this applies to relations with other people as well. In order to prevent discrimination, a healthy dose of understanding and information about those who are different from ones-self is necessary. When I asked if she believes that society can become more tolerant of people with disabilities like hearing impairment or Down syndrome my mother said “Well, I mean they need to. I mean just people with disabilities of all sorts. I mean tolerance is needed. I think there’s still a lot of intolerance towards anyone with disability. I think it’s getting better in some ways” (15:30). The future is starting to look up in terms of more tolerance of people with disabilities and special needs.

A fantastic story about tolerance and acceptance is that of how my parents met. Both my mom and dad lived in Germany for work (my dad was a software-engineer working for hospitals there, and my mom was a teacher for the army), and they met through an online chat service. Eventually, they got to know each other pretty well and started to talk about meeting up. “When it came time for us to meet I was scared to death”, my mom said, “for him to hear me. [voice chokes up] But anyway I finally got up the nerve to say something. That I was afraid for him to hear me” (27:48). She felt worried that because of the way that she talks, she’d be judged or that my father wouldn’t like her. Eventually, she did tell him about her hearing impairment and her worries about how she sounds. “I sounded differently or whatever and that I was afraid to speak on the phone and he said ‘let me tell you something, let me tell you about my cousin Bobby.’ He grew up with a deaf cousin, I mean totally deaf, and his cousin didn’t talk much. But Bobby would talk if he was with someone he was totally comfortable with and he [my dad] was one of those people. […] That was part of what made me fall in love with your dad” (27:52). Acceptance is incredibly important for a person’s mental well-being, and everyone, regardless of any difference they may have, deserves to feel accepted and understood. A small bit of acceptance can go a long way.